How Do We Assess Our "conditioning" Status

[firewatcher]

OK, if you look on many sites to assess your "fitness" level you find many options that just won't work for a POTSy person:

-HR at awakening and then increase of 20 beats or less of HR upon rising (duh, flunked that one! )

-Ability and time of walking a mile (um, does that include the time it takes to regain my eyesight? )

-Cardiac Stress test (flunked that one too! Stopped for excessive HR response )

-Pulmonary function test (aced this one! )

So HOW do WE assess our level of deconditioning? How do we truly assess our level of fitness?

I have one doctor saying that such and so happens because of my "deconditioned" status and another doctor saying that this lab work is off because of my increased muscle mass!

I am so confused...

Do ANY of you have criteria for fitness assessment for the dysautonomiac?

[Rachel]

I don't know if there is any good way to do it other than to compare yourself with yourself. As you are working on your fitness, look back over time and see if you are making slow, steady progress. You could set some goals for yourself and see if you could slowly work up to those.

With dysautonomia there is so much of a difference in symptoms and severity from patient to patient that it would be really hard, if not impossible, to come up with a standard of fitness for everyone.

Rachel

[mkoven]

I think it has to be individual too. Over the summer, I couldn't walk around the grocery store without feeling like I was dying. Today I was on the treadmill at 3.6 mph, 6 grade incline for almost 30 minutes. for me, a world of difference, in terms of "fitness" and ans symptoms. there are days when I have to do less, or it takes longer for my bp to kick in. and i have to exercise early in the day.

[turtlefairy5]

I have been having the same wonderings too. Yesterday, I felt crapola. Today, I felt much better.

The danger is that on good days, especially when they come after a string of bad days, I feel like I am on top of the world and I want to do what I can after spending day after day on the couch. So today, I took a shower, saw my therapist, then a little while after I came home I decided to go for a walk.

Wore myself out. Now I need to go to the grocery store, and I don't really have enough energy to do it.

I'm thinkiing that I need to move more toward strength-building exercises rather than more cardio exercises such as walking.

I do love my walks, though

Amber

[rymac]

I think it's almost impossible tell. I had a metabolic stress test in Bimingham in 06'. I lasted on the treadmill for about 9 minutes. I pushed as hard as I could but I was wiped out for the rest of the day. At work today I was on my feet walking up stairs and all over this building for about 2 hours. For a while I felt like I didn't have any kind if illness at all. Then it hit me and all I wanted to do was sit down. When I get an adrenaline rush I feel like I can do anything but I always pay a price later.

Taking care of yourself and keeping your sypmptoms under control is a 24 hour a day job with no breaks.

I think that concept alone is why it's hard for fairly healthy people understand this type of chronic illness.

bluesman

[iheartcats]

Taking care of yourself and keeping your sypmptoms under control is a 24 hour a day job with no breaks.

I think that concept alone is why it's hard for fairly healthy people understand this type of chronic illness.

bluesman

That is very true. Most people I know don't get it - it's even worse with co-workers as I just don't share much with them and they are baffled by me not looking ill.

I have no clue how to assess fitness. I know the ballpark of what my heart should not exceed working out/Pots Tachy Flare, but to maintain a 'good level' for working out (say 140-160?) I kinda have to stand and walk around and move a bit. Not really productive. I've been too afraid to push it and see if things balance out into a mild to moderate workout, at least not until I see Grubb.

I'll bring this question up to Grubb...as I really, really need to work on getting in (somewhat) shape. I'd personally feel better. And hopefully it'd be helpful to some POTS symptoms.

[mkoven]

I had around fifteen sessions of cardiac rehab and I think it is true that both aerobic and strengthening exercises CAN help us, if done in moderation, with duration and intensity GRADUALLY increased. I would initially see start and get a huge rush and drop my bp if I picked up the pace at all. But over time, I've been abl;e to do more. What I can't do is SUDDENLY increase speed/duration. Then I know I'm asking for trouble. I might add a couple minutes to my treadmill routine per week, and increase speed by tiny increments. Over time, I've been able to tolerate more. But consistency is key. I always wear compression, make sure I time my workout well with respect to meds (midodrine for me), and drink a liter of fluid with electrolytes immediately after. And I wait to leave the gym until my heart rate is in the low 90s.

As tempting as it is to suddenly want to take on the world on a better day, that doesn't work for me. That may be the day that I add a MINUTE to the treadmill, but no more. I also have to time the workout for my best time of day, which is before 2pm.

It's hard to figure out cause and effect, but I think the exercise has helped me. The only other thing I"ve changed since last summer when I could barely sit up is florinef. I think florinef did help me even begin to be able to exercise, but I've been on the same dose since August, and my activity tolerance has increased quite a bit since then.

There have been many posts on exercise recently that one could search through. One thing I've mentioned is that I do better increasing incline rather than speed. I think the extra muscle contractions needed to go uphill (against gravity) keep the blood pumping to my head. I've also mentioned that I can't do the stationary bike for some reason. I always want to faint. My doc thinks I must be pooling more in my abdomen on the bike.

I do remember that the first time I ever wanted to faint was soon after running faster than I'd ever run before, trying to keep up with a speedy friend. Although up till that point I'd been a regular jogger, that sudden increase in speed did me in. (I don't jog anymore, at least as much because of my joints). So I think being moderate and gradual is the key here. And figuring out what activities YOU can tolerate and enjoy. But I think it's safe to say that sudden bursts and spurts don't work for us.

[firewatcher]

OK, I have not been clear, I think.

When will I know that I am NOT deconditioned?

When will this no longer be an issue for the doctor?

Other than the way we "feel" how will we know?

[Guest tearose]

Okay let's try to look at how to know we are NOT de-conditioned...

For me it means...

1)

I sleep at night and take two or three short naps during the day which are the only times I lay down during the day.

Which means to the doctor: No, I am not laying around all day and being inactive.

2)

I take a walk on the treadmill OR a walk around my neighborhood OR I have gone out shopping and walked around OR I do floor exercises.

Which means to the doctor: No, I am not just sitting around all day.

3)

I sit and meditate for 20-60 minutes OR read something for 30-60 minutes or listen to music.

Which means to the doctor: No, I am not only focused on my symptoms and am doing things to relax, breathe and replenish.

4)

I do a hobby OR read OR cook OR write OR tidy house every day as I am able.

Which means to the doctor: No, I am not curled up in a ball on the sofa mindlessly watching tv and letting my brain atrophy.

5)

I try to save some energy points to go outside the house and volunteer OR sweep the driveway OR go to a spiritual service OR go to lunch with a friend...

Which means to the doctor; No, I am not isolating myself even though I am physically disabled.

I hope this helps.

tearose

[yogini]

I'm not sure what deconditioning means medically, but I think many of us aren't deconditioned. I wouldn't considermyself athletic, but went from being able to do the elliptical machine for 45 minutes one day, to having POTS the next day. I don't think anything happened to my conditioning, just somehting went wrong with my nervous system.

I do agree that it's hard to measure our fitness as compared to healthy people. I go to intermediate yoga class, which some of my friends might not be able to do. However, they can all do a long day's worth of activities basically every day, which I wouldn't try.

[ajw4790]

Hi,

I think this is a difficult one. I think for drs. they are not even sure of the best way. It totally depends on the individual and what there age, diagnoses are etc...

But, I think the starting point is realizing that the assessments for "normal" people will not be an accurate or appropriate way to test us. For us our ANS is out of whack, SO the measurements that are used to assess fitness are those controlled by the ANS. So, the results are not dependable. So, I think it is really hard to tell.

I think the best way is to go back to the thought process brought up by the article Low et al. describing quality of life is comparable to those with CHF or COPD. I didn't go back to look at the article, but do they use any assessments in their research that would be applicable? So, my thought is that you could maybe use the fitness tests that are used with these populations to assess our fitness level. For example something like the six-minute walk test may be appropriate. Then, compare it to the charts like you would for people with CHF/COPD and not necesarily "normal" people. I would have to go back and look to see how this would or would not actually work. But, I think to do a sub max fitness test is appropriate, but then assess it as if we were a CHF/COPD patient.

Does that make sense? My thoughts are really struggling right now!

[firewatcher]

My primary care doc says that I am quite conditioned using my lab-work and BMI. My creatinine is high, but he says it merely reflects my "above-average" muscle mass (I lift heavy things ) My cardiologist says that I am severely deconditioned because of my lousy stress-test results. Vandy said I'm moderately deconditioned due to a "high" resting heart rate (I was nervous, duh! ) Any my neuro said it wouldn't matter what shape I'm in because it is an autonomic issue.